Welcome uc-kp! You're right. This is an extremely hard decision to make. My daughter had the surgery in July (and the reconnect in November). For her, it was the best decision. She had 3 huge flares. Steroids would get her into remission and the other meds would keep her there for a short time. The steroids would do a number on her (luckily no osteo problems). She is a senior in high school, having a truly great, fun year. Looking forward to college.
Things to discuss with the surgeon:Laparoscopic or full incision? My daughter's surgeon only did full incision. She was fine with it and her scars are not terrible. The surgeon did a great job. What type of pain meds will you get? The surgeon preferred to have my daughter have an epidural. That along with the PCA (patient controlled analgesic?) worked well. Have the surgeon talk you through an "expected" surgery and recovery. How long will the surgery take (my daughter's step 1 was almost 6 hours). What type of recovery does he expect? How long in the hospital? What can you do when you get home? Will you have a 1, 2, or 3-step surgery? My daughter had 2 steps. The first one was to remove the colon and create the j-pouch. Then she had a temporary ostomy for 4 months (it could have been 3 but she wanted to march in homecoming). The 2nd step was to reconnect the j-pouch. What type of complications does he see you can have? My daughter had no complications. Some people find it easier to get up and walk after surgery. She had more difficulty. Loss of energy and slower. But she didn't care. She figured it was summer and she had nothing to do anyway.Where will your ostomy be placed? You also may want to see the appliance ahead of time. My daughter saw drawings of what the surgeon would do but definitely didn't want to see any real pictures. She also didn't want to see an ostomy appliance until afterward. I did research to see what would happen and what everything would look like. A therapist told me my daughter's reaction was fine and not to worry about it. The therapist was right.One possible issue for my daughter is that there is a chance of infertility in women with j-pouch surgery. We tried to discuss this as much as possible (pros and cons). She figured in the long run that she would rather be healthy and have a child (either naturally, with fertility help, or adoption) and be able to take care of the child than to flare either before, during or after being pregnant. She also didn't want to have to take powerful drugs for the next 60-70+ years.
My daughter was also in remission when she had her surgery. The surgeon said her recovery would be faster because she wasn't sick going into surgery.
Having a great support system, I think, is also important. It sounds like you have that with your family.
Post Edited (Bennie) : 3/17/2009 10:58:56 PM (GMT-6)
And, while I cannot vouch for the Florida branch, I've had all but one of my surgeries at the Cleveland Clinic in Cleveland...I wouldn't go anywhere else!! I'll be thinking of you...good luck!
Post Edited (OHIO76) : 3/18/2009 6:04:05 PM (GMT-6)
I live in Fort Myers and a good friend of mine had her j-pouch surgery done by Dr. Weiss at the Cleveland Clinic. She was very happy with him and the care at the hospital. So, you are in very good hands!
Since surgery is the ONLY cure for UC, you should be proud of yourself for being brave enough to go for it. Life is so much better when you're not sick, and as an added bonus, you won't have to take prednisone anymore. Woo hoo to that!
That's great that you already have a date set for surgery. You are doing the right thing and are going to feel amazing by the time your baby arrives in 7 months. Congratulations!
There are a couple of things that I would take with me... some hard candy to suck on, like butterscotch or rootbeer, once you get the go ahead for liquids. They keep the digestive tract active to help to "wake up" the plumbing after surgery. Also, gum if you'd rather. Tho personally I think chewing gum causes more gas - like swallowing air. I'd also take a small notepad and pen to take notes ... believe me, pain meds do NOT help the memory, and you can also jot down questions you want to ask the doctor too. I think you could probably stay busy enough with your laptop. I know I couldn't concentrate on reading a book -- again the meds let the brain wander! If you have an IPOD, maybe use that to drown out the hospital noises so that you can sleep; maybe a sleep mask ($3) at Walmart, so that the lights that they flip on in the middle of the night to do your vitals won't wake you up. I just got a sleep mask about a month ago for here at home (I'm in the process of buying curtains for our home) and I LOVE MY SLEEP MASK!!!!
hang in there! You are soon-to-be disease free!